Stephen is a wonderful little 5-year-old little boy who
loves cuddles, cartoons and being sung to.

Stephen was born with TBCK syndrome, a rare genetic condition that effects around 100 children worldwide. This is a life limiting condition and causes him to suffer from epilepsy, hypotonia and developmental delay. Stephen's muscles are very weak, and he requires time on his ventilator to help him breath for around 12-16 hours a day.

Because of his breathing issues and his seizures Stephen needs 24-hour care and has not managed to learn to walk or talk. Mum and Dad spend a lot of time with him to develop tools for communication as we want him to have as much agency in his life as possible. Stephen can say "no" and "mum" which is a massive achievement, though we know with support he will do more.

One significant tool we have been lucky enough to have a brief loan (2 weeks) of is a piece of eye-gaze technology. This is like an iPad that Stephen can operate simply by looking at it is an, the specific device he needs is called a "Tobii Dynavox I-13 Gaze Intera", this model is essential for us as it works when our son is on his ventilator as well as when he isn't. We have tried some of the cheaper models (though none are that cheap) but they can't track Stephen’s eye movements when on his ventilator making it unusable for the majority of the day.

This vital tool for communication isn't funded via healthcare unless the child can evidence specific functions repeatedly. Like use it to speak a three-word sentence or repeat a requested action multiple times. But without time to actually use the device and learn these requirements, funding from health is essentially impossible and for a child like Stephen he will never be given the opportunity to learn.

Our ability to interact with our world and talk is essential and something we all take for granted. For Stephen he needs significant help to be able to do the same thing we all enjoy daily.

I understand how difficult times are right now, but anything any of you can do would mean so much.

Thank you for taking the time to read this and take care.

Little Stephen and Family xxx

7.5% of all donations to Tree of Hope in relation to this appeal will be allocated to the general charitable purposes of Tree of Hope to cover our core operating costs.

If we raise insufficient funds, or surplus funds, then the funds will be used, if appropriate, to fund support for our child’s needs in accordance with Tree of Hope’s charitable objects.  If in those circumstances we are unable to use all or part of the funds for the benefit of our child in accordance with Tree of Hope’s charitable objectives, then any funds that cannot be used will be transferred to be used for the general charitable purposes of Tree of Hope